The International Health Terminology Standards Development Organisation

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The International Health Terminology Standards
Development Organisation

• A Perspective by the Potential Charter Members
• Professor Martin Severs

2
Conference Thought

• Minds are like parachutes they only function
  when open
• Thomas Dewar
• I am going to be very open but it should be
  noted we are in a state of negotiation and rapid
  change so some of the details or labels may change

3
Who are the Potential Charter Members?

• Australia
• Canada
• Denmark
• Lithuania
• New Zealand
• United Kingdom
• United States

• Plus ongoing discussions with two other countries
  who are as yet undecided

4
What is going on now?
College American Pathologists CAP
Potential Charter Members PCMs
A Group of Countries have got together with the
intent of purchasing SNOMED CT from College of
American Pathologists CAP
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What is going on now?
CAP
PCMs
Own Manage Support the SNOMED portfolio
IP IPR
Support Requirements
New Legal Entity
The PCMS have had to specify What Intellectual
Property IPR they wish to purchase What is
required to support it What type of organisation
is needed to run it How to fund the operation
Fair Share Funding mechanism
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What is going on now?
CAP
PCMs
Negotiation Current
Own Manage Support the SNOMED portfolio
IP IPR
Support Requirements
New Legal Entity
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What may happen?
CAP
International Health Terminology SDO
Own Manage Support the NON- SNOMED CT portfolio
SNOMED CT IP IPR
Supply a Support Service
CAP Support Service
SDO Managed Support Services
Open Market Derivative Products
New Technical Infrastructure
Potential result of successful negotiation
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SNOMED Enterprise Components
SNOMED CT
International Release Core
National Extensions Releases
Open Market Works
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What is the SNOMED Terminology? (1)

• Documents describing the SNOMED CT standard(s)
  specification(s)
• The terminology database consisting of
• Concepts
• Descriptions
• Relationships
• Attributes
• A set of specified technical tools for supporting
  development and request processing

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What is the SNOMED Terminology? (2)

• A set of SNOMED allied standards, which enable
  SNOMED to effectively interoperate with and/or
  map to, other international information standards
• Includes implementation standards for the
  successful use of SNOMED including
• Translations
• Reference implementation instructions

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Why are we doing this?

• More costly develop alternative 25-50m
• Delay the e-health agenda by developing an
  alternative lt5 years
• Vendor costs would increase with multiple
  standards
• Avoid huge cost of data migration later 28B
• Avoid patient safety risks from data migration
  both deaths and injury

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Why are we doing this?

• Commercial Benefits
• Costs are minimal (compared to an Electronic
  Patient Record System 100s of millions)
• Charges are affordable and shared, and based on
  the ability to pay
• Charges reduce as new Members join OR greater
  investment in improvement
• The investment risks are significantly reduced
• Protect Healthcare IT investment now

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Why are we doing this?

• Improved Governance
• Validated Product
• Shared Ownership
• Localisation Support
• Global Collaboration
• Compatible with Other Standards

• Enhanced Contribution
• Sustainable Model
• Code of Conduct
• Simple Licensing
• Vendor Engagement
• Clear and transparent management processes

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Why are we doing this?

• Validated Product BUT it needs to be better
• Leading Global Terminology from independent
  assessment Problems noted
• Most ready for Local Implementation
• 100 million already invested in SNOMED CT let
  us build on the intellectual financial
  resources

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Three Principle Drivers

• Purpose
• Support clinical care of patients internationally
• Primary and secondary purposes
• Integrity
• Ensure clinical, organisational and technical
  integrity
• Funding
• Stable and secure governance structure
• Financial sustainability

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What is intended to be included?

• SNOMED CT and its allied standards with their
  artefacts and associated Intellectual Property
  and Intellectual Property Rights
• Inclusions are based on Two Tests
• Content necessary for international conformance
  and interoperability
• Standards and policies required to maintain the
  principles

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What is intended to be included?

• A set of requirements with products and
  performance metrics delivered through
• A set of services to be delivered by CAP over 3-5
  years
• Would include some contract/license migration
• A set of services to be delivered by the
• SDO or
• SDO subcontractor or
• National Release Centres

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How is it Governed and Managed?

• Legal Entity is hoped to be a Danish Society
• Not for Profit type organisation, but has an
  unusual name Commercial Society
• The legal entity holds liability not the Members
  of it
• Described in its Articles of Association which
  will be published and open
• Registered in Denmark

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Global MembershipGlobal Outlook
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SDO Structure
GENERAL ASSEMBLY
Harmonisation Boards
Vendor Forum
Management Board
Finance Operations Committee
Research Innovation Committee
Technical Committee
Content Committee
Research Teams
Task Finish Groups
Working Groups
Working Groups
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SDO Structure
GENERAL ASSEMBLY
Harmonisation Boards
Vendor Forum
Management Board
Finance Operations Committee
Research Innovation Committee
Technical Committee
Content Committee
The financial framework ends above the line i.e.
WGs will normally NOT be funded
Research Teams
Task Finish Groups
Working Groups
Working Groups
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New SNOMED Enterprise Model
National Release Centre
SNOMED SDO
National Release Centre
National Release Centre
Local/National Health Entities
National Release Centre
Shared technology environment enables
collaboration
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Membership and Licenses

• Member Countries
• Governments or their responsible agencies
• Access by ALL citizens and users within the
  jurisdiction
• Charter Members have Management Board Rights
  until 2011
• Vendor License
• Required in non-member states when SCT is used
  for money generating activities
• Additional benefits
• Affiliate License
• Required in non-member states when SCT is
  required for RD, interest, etc postage and
  package fee

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Emergent Phenomena

• PCMs
• View of a standard is the specification, the
  software product and its implementation guidance
  All need to be kept in alignment in real time.
  Maintenance is key
• Want to see increasingly specific requirements
  and performance metrics
• Explicit balloted and endorsed production process
  standards
• Perceive the quality of the terminology as
  important as the quality of the finances

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Emergent Phenomena

• PCMs
• Are contemplating both internal and external
  quality processes external could
• Assess the extent of the quality processes
• Adherence to the quality process
• Recommend actions for the future
• Are aware of real world tensions between
  contribution and alignment, innovation and
  consolidation, systemic desirability and
  practical feasibility

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Emergent Phenomena

• There needs to be the purchase of a new technical
  infrastructure over the next 5 years starting as
  soon as possible
• The capacity in terminology competencies and
  related subjects needs to be improved
• Accreditation of organisations and certification
  of individuals may need to be considered

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Conclusion

• We will uphold the principles of the endeavour
• We are committed as 7 countries to work together
  and with any other willing partners to make
  SNOMED CT and its Allied Standards
• Available
• Accessible
• Open to
• Valued by
• Patients, Clinicians, Health Informaticians,
  Policy Leads, Managers Vendors across the world

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Please wish us well!